Social Media and Oncology: Creating Unprecedented Opportunities for Connecting and Learning

Dec 14, 2015

By Shira Klapper, Senior Medical Writer/Editor

On any given day, ASCO staff are at work keeping the social media channels humming, with numerous posts to platforms such as Facebook, Twitter, and blogs on ASCOconnection.org (our own professional networking site). The three channels that make up ASCO’s online presence—ASCO, Cancer.Net, and the Conquer Cancer Foundation of ASCO (CCF)—broadcast information around the world, providing oncologists, allied health professional, patients, and the public with the latest news on important cancer research, resources for caregivers, and information about meetings, educational opportunities, and CCF fundraising campaigns. In addition, ASCOconnection.org blog posts provide firsthand insights into the day-to-day experiences of everyone involved in cancer care, including oncologists, radiologists, surgeons, and nurses, as well as patients, patient advocates, and the general public. Today, anyone can stay up to date on journal articles, policy issues, research innovations, and cancer news, posted to 15 ASCO-managed social media channels, across seven platforms: Twitter, Facebook, YouTube, LinkedIn, Google+, Storify, and Instagram.

When ASCO leadership and volunteers talk about social media initiatives, a crucial theme emerges: Social media serves as one of the major public health engines of the 21st century, granting doctors and the general public alike unprecedented access to information on cancer prevention, treatments, research, and survival. Social media also opens the lines of communications between doctors and the patient community like never before—for example, Twitter’s TweetChats enable open conversations between information-seekers and experts in oncology care, offering support, guidance, and knowledge to all those affected by cancer.

As anyone who has spent time on Facebook knows, not all information on the Internet is created equal—and this is where ASCO’s reputation as a trusted source in cancer care comes into play. Those following ASCO’s social media activities know they are reading information vetted by top experts in the field of cancer care, whether in Facebook posts about late-breaking research from the Journal of Clinical Oncology (JCO) or in live tweets from the thematic and Annual Meetings.

Social Media Working Group: Providing guidance and strategy

ASCO’s social media story began in 2011. Recognizing that social media had become one of the primary shapers of national conversations about heath care, ASCO leaders decided to create a new dedicated staff position: Social Media Manager. Soon after, ASCO wrote a social media policy to define the purpose of social media at ASCO and the scope of its operations. The policy functions as a living document, open to ongoing updates and improvements. From 2012 to 2013, ASCO experienced tremendous growth in its social media activities; during that time, the Society added numerous channels to its social media portfolio and experimented with creative approaches to the live tweeting of the thematic and Annual Meetings. In addition, in 2012, several volunteers, who became inaugural members of the Social Media Working Group, co-authored the influential Journal of Oncology Practice (JOP) article “Practical Guidance: The Use of Social Media In Oncology Practice.”

In fall 2014, ASCO formed the Social Media Working Group, composed of noted oncologists, including Deanna J. Attai, MD, Don S. Dizon, MD, FACP, Michael Fisch, MD, MPH, FACP, FAAHPM, David L. Graham, MD, Matthew S. Katz, MD, Merry Jennifer Markham, MD, FACP, Sumanta K. Pal, MD, Richard L. Schilsky, MD, FACP, FASCO, and Michael A. Thompson, MD, PhD—all major players in social media in their own right. According to Dr. Fisch, the Medical Director of Medical Oncology for AIM Specialty Health in Chicago, the Working Group functions “as ASCO’s social media think tank,” meeting five times per year to help create the social media strategy for the coming year, to discuss opportunities for communication, and to identify expert tweeters to share official ASCO news from thematic and Annual Meetings. Dr. Fisch also lends his social media expertise to SWOG as Co-Chair of the cooperative group’s Social Media Working Group.

The efforts of ASCO’s Social Media Working Group reflect an important part of the Society’s social media philosophy—the conviction that ASCO’s public messaging should be the result of coordinated efforts of member-volunteers and staff within the Communications and Patient Information Department. This collaboration ensures that all social media posts broadcast from ASCO are vetted by experts in oncology.

In addition to penning scholarly papers, the Social Media Working Group has created “Social Media 101” resources for cancer care providers, patients, and patient advocates who wish to start tweeting, instagramming, or posting educational videos to YouTube; these resources help establish ASCO as a thought-leader in social media education for physicians.

As well as maintaining an active presence on general-interest social media platforms such as Facebook and Twitter, many members of the Social Media Working Group blog for ASCO connection.org. Visit the Commentary page to read posts such as Dr. Dizon’s “Survivors’ Guilt: Dealing with Anxiety and Questions Years after Successful Cancer Treatment,” Dr. Fisch’s “Palliative Care in Oncology (PallOnc): At the Crossroads,” Dr. Katz’s “E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Health Care Better for Everyone,” and Dr. Thompson’s “Are We Ready for ‘Academic Promotions Should Consider Social Media?’”

ASCO: An innovator in oncology social media

In 2014, ASCO pioneered the Featured Voices program, which identifies select attendees who live-tweet and post upto- the-minute news from the thematic and Annual Meetings. These Featured Voices are not official ASCO tweeters— all opinions are their own—but their tweets and posts carry the stamp of a trusted and reliable source. The volunteers for Featured Voices tweet from their own professional accounts and use ASCO hashtags, such as #ASCO15 (2015 Annual Meeting) and #GI15 (2015 Gastrointestinal Cancers Symposium), enabling anyone on Twitter to follow the proceedings.

Of course, tweeting from the Annual Meeting is open to anyone. “It’s a very democratic space,” said Dr. Fisch. “Everybody at the meeting is a potential ASCO Annual Meeting reporter.” (See “ASCO Social Media Engagement” on p. 24 to learn more about the number of people reached through social media at the 2015 Annual Meeting). Dr. Thompson—who, along with Dr. Katz, created numerous disease-specific hashtags for the Annual Meeting tweets—said that ASCO’s social media efforts open up the Annual Meeting to a wider audience—especially those who cannot make it in person.

“If a doctor misses a meeting because they don’t have the funding to go or they’re rounding, they can follow the tweets and feel like they’re actually at the meeting. The same goes for patients—It could be that a patient is in the chemo suite getting chemotherapy, yet they still have a little window into what’s going on in Chicago,” Dr. Thompson said. He is a Hematologist/ Oncologist for Aurora Cancer Care and the Medical Director of Early Phase Cancer Research at Aurora Health Care.

Dr. Fisch agreed. “Nothing from the Annual Meeting will pass you by if you’re looking at ASCO hashtags and at the official tweets every day.”

Opening channels of communication between patients, doctors, and the general public

Social media efforts—whether conversations on Twitter, YouTube videos, or blogs—allow the conversation between doctors and patients to continue outside of the clinic walls, granting each party access to experiences and perspectives that would be difficult to convey during a routine office visit.

“I think social media gives us a new way to have insight into the cancer experience,” said Dr. Katz, the Medical Director of Radiation Oncology at Lowell General Hospital and a partner in Radiation Oncology Associates. “I don’t see a role for social media in the therapeutic relationship between actual physicians and patients, but what I’ve learned online has definitely helped me gain a better understanding of how I can help my patients. I’ve found it extremely valuable being involved in live chats on Twitter, where I hear what people’s experiences have been with their breast cancer, brain tumors, or other diseases. Participating in these chats allows me to understand somewhat better what some of my patients might be going through, whether struggles with the health care delivery system, anxiety about uncertainty related to cancer diagnosis, or other areas where they may need support.”

Echoing Dr. Katz’s comments, Dr. Dizon, an Associate Professor at Harvard Medical School and the Clinical Co-Director of Gynecologic Oncology at the Massachusetts General Hospital Cancer Center, said that social media allows oncologists to learn about aspects of cancer not often taught in standard medical texts.

“If you look at how we traditionally learned about patient care, it was through the published results from clinical trials and the patient outcomes, or we would learn through textbooks and our own anecdotal experiences,” said Dr. Dizon. “But if you stick with more traditional learning channels, you don’t get the birds-eye view of what the patient experience might actually be like. The nice thing about social media is that you can observe experiences from eyes you may not have even thought about looking through. The experiences I’ve had on social media have highlighted just how diverse the experiences of cancer can be.”

Dr. Fisch explained how specific features of Twitter enable connections between patients and doctors. “What happens in the ‘social’ part of social media is that people can either follow you or they can mention you, which in a sense means they’re talking to you by calling out your Twitter handle, or they can direct message you. Through social media, patients and survivors start to talk to you and tell you their stories,” he said.

TweetChat: Front-row access to cancer experts

TweetChat, which functions as a virtual question-and-answer session, enables anyone to participate in online conversations, often hosted by one or several moderators. To join the conversation, participants tweet during a designated time using a specified hashtag. For example, Dr. Attai co-moderates the weekly Breast Cancer Social Media (#BCSM) chats, in which anyone affected by breast cancer can share stories, ask questions, and discuss the disease with experts. She is an Assistant Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA, a breast surgical oncologist at UCLA Health Burbank Breast Care, and President of the American Society of Breast Surgeons.

“When I first joined Twitter in 2010, I wasn’t really sure where I belonged, but I saw right away that women were talking on Twitter about things that they should be discussing with their doctors, and clearly they weren’t getting the information they needed,” said Dr. Attai. “So I found myself doing online what physicians do every day, offering advice to people who aren’t our own patients but want our guidance— friends, neighbors, people you run into in the grocery store—suggesting questions the person should be asking their doctor, or reinforcing the need for a second opinion.”

Dr. Thompson is also the moderator of a TweetChat, #MMSM (Multiple Myeloma Social Media; #MMSM recently marked its 20th Twitter conversation).

He said these chats not only benefit those who actively participate, but also the passive participants who review the transcripts at a later point to find references and links to sites, such as ASCO’s award-winning Cancer.Net, which offers patient-friendly, accessible information on cancer care.

Blogs: Long-form social media

Tweets, which have a 140-character limit, can pack a lot of information into a small space, but when oncologists want to write longer essays about topics that spark their interest, they can turn to the blog format.

Dr. Dizon, a prolific blogger who posted his 100th blog post on ASCOconnection. org in October 2015, uses the platform to address the struggles, successes, and myriad experiences of both patients with cancer and the doctors involved in their care. His blog thoughtfully tackles difficult subjects such as sexuality after cancer diagnosis and the emotions oncologists face on a day-to-day basis.

“I write about experiences that I’ve taken a lesson away from or an event that has impacted me in some way,” he explained. “Blogging gives me a forum in which to tell a story about events that have evoked some sort of an emotion, whether it is sadness, humor, or in some cases, even frustration. It’s sort of cathartic, actually.”

Dr. Dizon said blogging can touch a chord in both patients and doctors alike.

“Some of the feedback I’ve gotten is from perfect strangers who contact me through Twitter or will send a note through social media sites, just saying, ‘Your blog spoke to me because this is what I’ve been going through and this is what my experience is like.’ My goal is to help patients understand that physicians are actually human and have human experiences. I think understanding the human side of medicine is part of the art of medicine,” he said.

Recently, Dr. Dizon’s posts enjoyed a pop-cultural moment when Amber Marchese, of the show The Real Housewives of New Jersey, cited Dr. Dizon’s blog in a People magazine essay about her breast cancer recurrence. Ms. Marchese wrote, “Hearing Dr. Nissenblatt’s words remind me of a story Dr. Dizon wrote [in] an article for his blog on the American Society of Clinical Oncology’s site, called ‘A Tale of Two Women, HER-Positive Breast Cancer and Clinical Trials.’”

A route to professional development

According to Dr. Fisch, the ease of publishing on social media allows oncologists to get their ideas out into the public within a quick timeline—and to thus build their professional names.

“I had this idea for a piece on moneyball in oncology, so I wrote it up as a blog for ASCOconnection.org and it was published immediately,” said Dr. Fisch. “Blogs are great if you want to get the idea out closer to when you have the inspiration. A few months later, I published an article on this topic in JOP, but the timeline for that was much longer.”

Dr. Katz added that even if doctors choose not to blog, they can further their professional development by participating in chats and Facebook groups. An example of this kind of group is the Twitter-based radiation oncology journal club, #RadOnc, hosted by Dr. Katz on a monthly basis; an average of 60 people from multiple countries join for each session.

A fundraising tool

Social media platforms are great at fostering communication between patients and doctors and delivering up-to-the-minute news on cancer research. And for the Conquer Cancer Foundation of ASCO, social media is also a powerful tool for building awareness of fundraising campaigns. The Foundation’s #WeConquerCancer fundraising platform allows people to easily set up a customizable fundraising page; social media links are embedded into the page, enabling easy sharing with friends across Facebook, Twitter, and other sites. The organizer can then invite other team members to join in fundraising efforts in honor of a loved one who has been touched by cancer, to celebrate a life milestone, or to simply support an important cause.

How can I become more involved in social media?

Oncologists wishing to become more involved in social media can find a helpful “Social Media 101 for Cancer Care Providers” guide on ASCO.org. In addition, “Top Ten Tips for Getting Started on Social Media” provides practical, easy-to-implement suggestions, including:

Start by following known organizations and people that share trusted information relevant to your needs. Over time, you’ll discover others to follow and engage with through these initial connections; and

When you’re ready to begin posting, use simple language and keep your posts or tweets as brief as possible. When it comes to social media, less is more.

Dr. Dizon emphasized that many doctors express concerns about balancing professionalism and privacy in social media. “Of course we need to be thoughtful in our use of social media, but the risk of being on social media is not a reason to stay away from it,” he said. “The risks of social media are small, but the potential benefits can be great.”